CEO UPDATE ON ORKAMBI - 6TH JUNE 2016

Now is the Winter of our Discontent … but is our dissatisfaction about to end?

We are now in the Australian Winter and more than a month after the devastating decision by the PBAC not to reimburse Orkambi, the cystic fibrosis community remains outside the ‘stakeholder consultations’ about the funding of costly new generation drugs.

The consumer voice should be acknowledged and Cystic Fibrosis Australia needs the CF community to mobilise. Click here for more information on how you can help.

To demystify and improve understanding about sexual and reproductive health for adolescents with cystic fibrosis (CF), a new online tool has been developed by Cystic Fibrosis Victoria, the Royal Children’s Hospital and Monash Medical Centre and a range of experts in CF, sexual health and digital communications. SPILL has relevant, targeted and age appropriate information in both text and video formats, for adolescents with CF who are just learning about their sexual and reproductive health.

FOR three months of this year, Jade Kollmorgen’s classroom was a hospital bed.
But the ambitious 17-year-old, who suffers from the lung condition cystic fibrosis, didn’t let that get in the way of finishing her VCE.

Olympic bronze medallist Tom Walsh could give the Crusaders a fright this Sunday at Christchurch Boys High.
The 24-year-old isn’t pulling on his old rugby boots, but will be facing the Crusaders in an annual charity T20 cricket match for Cystic Fibrosis New Zealand.

Olympic bronze medallist Tom Walsh could give the Crusaders a fright this Sunday.
The 24-year-old isn’t pulling on his old rugby boots, but will be facing the Crusaders in an annual charity T20 cricket match for Cystic Fibrosis New Zealand.

Olympic bronze medallist Tom Walsh could give the Crusaders a fright this Sunday.
The 24-year-old isn't pulling on his old rugby boots on but will be facing the Crusaders in an annual charity T20 cricket match for Cystic Fibrosis New Zealand.

Researchers with funding from Fight for Sight have demonstrated that a new drug treatment for cystic fibrosis and Duchenne muscular dystrophy can override a genetic fault that causes choroideremia – a severe blinding disorder.

Moama Bowling Club was lucky number 49 for Ricky Holt.
In the 55-year-old’s quest to play on 50 bowling greens in 50 days, Ricky came through Moama on Friday to play against some local players and raise some money for his chosen charities.

Moama Bowling Club was lucky number 49 for Ricky Holt.
In the 55-year-old’s quest to play on 50 bowling greens in 50 days, Ricky came through Moama on Friday to play against some local players and raise some money for his chosen charities.